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04-28-2009, 12:57 PM
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Member
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Quote:
Cherie, Tysabri is approved for RRMS and SPMS with Relapses and use in the US requires TOUCH enrollment by the patient, the doctor, and the infusion center. Tysabri has not been studied in SPMS patients so the benefits with this patient population are unknown/unproven. If your friend has continued to take the drug, I'm assuming they/their prior Doctor felt it was providing a benefit vis a vie the risk. As far as infections and what to do, your friend really needs to consult with a Doctor who can provide guidance based on knowledge of the infections. I personally would get a new Neurologist. My experience is limited as I haven't had any infections at the time of my Tysabri infusions. I've read other posts where patient infusions were just delayed (by a week or so) until the infection had been brought under control by antibiotics. This would certainly be the most cautious route and the route I would take absent any professional input. Chris |
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04-28-2009, 01:29 PM
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Grand Magnate
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Thanks Harry and Chris.
Chris, as I mentioned in my first post, he is full blown SPMS, and does not have relapses/remissions any more. He's gotten around it with the phoney classification, but Tysabri would not be approved for him otherwise. I agree that he should get a new neuro. This guy says his neuro "hasn't even read up on Tysabri", so I just don't see how he could be a registered through TOUCH.  I guess changing neuro's isn't a good option for him . . . but I will reiterate that. Thanks, Cherie
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04-28-2009, 03:50 PM
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Magnate
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If this person is in the USA, he is under the TOUCH program. That means that the Tysabri prescription has to be renewed every 6 months. That means the doctor and infusion center have to be TOUCH certified.
If he has no confidence in his doc, he should find one that he DOES have confidence in. I can't imagine going through all this without the doc on my side and alert to what is going on with my treatment. While my neuro doesn't treat my general medical problems, he would consult with my GP as to what is going on and what to do about it, since he knows more about the drug than the GP does.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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| "Thanks for this!" says: | SallyC (04-29-2009), tovaxin_lab_rat (04-29-2009) |
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